Did you know the most common genetic disorder in the world is sickle cell disease? Sickle cell disease can affect anyone, but it is mainly a genetic blood disorder that is NOT contagious. Infants are born with the disorder when they receive certain genetic markers from their parents. Both parents must be carriers of the sickle cell trait or one parent has the disease and the other the trait in order for their child to be diagnosed with SCD.
Sickle cell disease can affect anyone
Sickle cell disease can affect anyone, but it, “primarily affects Black Africans and Americans, as well as some persons of Mediterranean, East Indian or Latin American heritage. About 8% of the African-American population carries the sickle cell trait. (source)”
September is Sickle Cell Awareness Month
September is Sickle Cell Awareness Month and throughout the entire month, I am raising awareness on my blog, CleverlyChanging.com about the disease. My hope is men and women all over the country will learn their trait status and be informed when they decide to have children.
When my husband and I decided to have children, neither of us knew that we were carriers of the sickle cell trait. Now, we have a daughter who is living with sickle cell anemia. Sickle cell anemia can cause a person to have numerous chronic health problems, but most commonly causes patients to suffer from a significant amount of pain in different areas of their bodies. The disease can be fatal, and can cause strokes, leg ulcers, vision problems, acute chest syndrome, etc.
As a result of the prevalence and significance of this disease, hospitals across the U.S. now test all newborns for this blood disorder at birth. The first time people hear about sickle cell disease should not be when they are pregnant nor when their child receives a confirmed diagnosed. Instead, it should be something that we are speaking about openly in our communities.
WHAT CAN YOU DO TO MAKE A DIFFERENCE?
By raising awareness my goal is to encourage people to get tested for the trait, donate to help fund sickle cell research, and encourage people from diverse backgrounds to donate blood.
Many people living with sickle cell disease need to receive blood transfusions regularly in order to survive, so more blood is always needed to help patients with sickle cell live.
Throughout the month of September I am also encouraging people to sign up for the Be the Match Donor Registry. Register here: join.bethematch.org/SC3Carley or Text SC3Carley to 61474.
WHERE CAN YOU LEARN MORE?
Please feel free to join the conversation on twitter by following the #sicklecell and #30forsicklecell hashtags about sickle cell. Join the fight to help us raise awareness about this disorder.
A RESOURCE FOR CHILDREN GROWING UP WITH SICKLE CELL DISEASE
“A Sickle Cell Coloring Book for Kids” provides education and support to families who have children living with the disease. Buy the book on Amazon: bit.ly/scdcoloringbook
The Sickle Cell Community Consortium Doctor’s Panel approved this book.